February 14, 2012

The picture you're viewing is my tummy with the markings that show where the treatment machine needs to line up with in order to zap the right area of my spine.

It's not a scary procedure, even though two huge machines exchange places. One zaps the area from under me to the spine and the other zaps the spine from topside through the stomach, etc. This is the zap that has the side effect of nausea. Some days I just make it home to throw up. Planning a little more carefully this week, I'm not eating anything and am only drinking water. In addition I'm taking a nausea pill before we leave for my zap appointment.

The table I lay on is very hard. My legs are put into a form to help keep my legs still. Keeping still is the most important thing I can do. Otherwise the zapping will not be in the right place.There are always two people who move me this way and that to make sure I'm in the right place. They're very nice to me and try not to hurt me unnecessarily. The staff who treat you for any of the procedures you might have to endure are very important. If they are not kind, concerned and empathetic you need to find another treatment place.

And don't be afraid to ask questions, because you will have them.

As I've been searching online I found a good resource for Breast Cancer Metastases to the Bone. The link is below. I'm still angry that women aren't told they have a 30% chance of getting this...no matter how many years they've been "cancer free."

I had my Breast Cancer back in 1998. Here it is 2012, 14 years later. I thought I was a "survivor."

A "survivor" for almost 14 years, and now I am one of the 30% with a Cancer that can't be cured. A cancer that I will be battling the rest of my life. And boy will I battle, 'cus I plan on living into my nineties.

February 01, 2012

Today, as the Chief was driving me to an appointment, we were quickly approaching a truck that had it's brake lights on.

Now the Chief and I have different driving styles, to put it mildly. And unfortunately I am a Nervous Nelly passenger. So, I loudly said something about slowing down. Now I know he's a good driver and I also know that saying that to him did not set well, even as I said it.

I turned my head towards him and sweetly said... "Honey, that made me feel a little bit nervous and scared. AND you KNOW I'm supposed to feel calm, peaceful, and joyful at ALL TIMES!!!

January 16, 2012

So, starting where I left off. Tests became a hobby of mine. And then, an x-ray of my lower back was taken to see if back surgery was needed. Unfortunately, that x-ray did indeed show my back was a mess and could use surgery. But, there was a "shadow" on the x-ray that needed checking out. And, that's when they found the Cancer.

Yup, Cancer. Makes my Fibromyalgia seem a little wimpy. In 1998 I had Breast Cancer which was successfully treated. Now I find out that certain cancers are Metastatic no matter how long between original onset and new.

After several tests it was determined that I had Metastatic Breast Cancer on my bones. The good news is that it has not spread into the bones or any organs.

I have started part of my treatment (one shot a month that takes 20 minutes and one pill each day the rest off my life.) And I will start radiation treatments soon. It was my lower back that had been hurting so badly and it turns out that is where a lot of the cancer is (especially at the T12 disc). So Friday I will be having two procedures - burning off some of the cancer and then repairing the disc with cement so it will be able to support the spine.

When that heals they will start the radiation on my back in the same area.

To see the cancer they did a CT of my bones...and the result reminded me of the dot-to-dot drawings that kids do. Black ugly spots on all my bones; my head looked as if I were wearing a crown.

The pain has gotten so bad that my best bet is to lie in bed with hot or cold packs. I miss being at my computer, looking out my window, watching my birds. But, as my dear sister told me...."it's only temporary, you'll be back."

And I couldn't have a better person to care for me than my handsome husband, the Chief.

November 27, 2011

When I was diagnosed with Fibromyalgia about two years ago, it was because of the pain I had been experiencing. As is my custom I had already looked up my symptoms (OMG thanks be to the Internet). And sure enough my wonderful Doc checked all the pressure spots, successfully creating pain in the majority of them.

We were now at the Fibromyalgia starting gate, so to speak. Currently there are about three major drugs used to treat "Fibro." I tried the first pill for about three months and gave it up due to side effects. The second pill didn't even make it that far, again because of side effects.

As an aside I have already lived with arthritis starting in my thirties, along with severe back pain, Chronic Liver Disease, and Hypothyroidism. I survived these many years with the help of powerful arthritis medication. In 1998 I was diagnosed as having Breast Cancer. Caught early by my annual mammogram, with surgery followed by Radiation Treatments, I have gratefully survived that side road.

Then fairly recently in the scheme of things I had symptoms that showed I was in the early stages of Renal Failure due to all the arthritis pills I had taken. Those pills were immediately stopped.

With that bit of medical history out of the way...

I am currently in about my tenth month of trying Cymbalta. But, I am not a happy camper with how it's working.

By the way, I don't fault my doctor for any of my trials finding the "one" that will work. From what I read almost all Fibro patients have the same problem...some can't even find a doctor that understands how the disease works.

Most of these meds have to be stepped up and down for dosing. I started Cymbalta at 30mg for a few months and then was upped to 60mg. I had some side effects but I was really hoping this would work and the side effects would lessen. A few months later I experienced an increase in my chronic depression so the dosage was upped to 90mg.

You now probably have a mental picture of me sitting in a wheelchair with my head hanging to one side and my tongue coming out the side of my mouth. Well I do have a bright red scooter I use if I go somewhere. And right now I'm in bed pecking at the keyboard on my iPad2.

The other day I saw my doc. I explained what was happening and that I had dropped my dose back down to 60mg.

And then I told him..."Ya know my brain is my best asset and I don't want to lose it because of the meds. And, with all the things I have going on how do we decide which is Fibro and which Is Cancer?"

That is why I have the above pictures of the Russian Stacking Dolls. Say the littlest doll is how we start out in life and the largest doll is how we are now while the other dolls hold all the other medical problems we've lived through. How do we get through all that and find the source of what is currently the problem?

After I asked my question he began writing orders for different tests. Tests for all sorts of things. And then he referred me to a pain doctor. The test results came back ok except for one which required a change in medicine. And it wasn't for the Fibro.

I wanted to write this blog for all the Fibromyalgia patients world wide. I have learned much from them and hope this helps them look at things a little differently.

Most of the side effects I listed above are true side effects of the medicine. But they are also symptoms of Fibromyalgia. We need to keep in mind that just because it is a symptom of the disease doesn't necessarily mean it is from the disease. Read about the other medical problems you may have. And most importantly, read about the side effects of the medicine you're taking.

November 20, 2011

Having my one and only child born around the time Sesame Street came on the air was fortuitous for us both. Well, I may have enjoyed it more that she. In fact, the runner up program for second place was Saturday Night Live. What a nice time for television viewing.

Here is another example of the "One of These Things" game:

Prim and Proper

Bared Ankle

Boy, do I remember when women could finally wear a pant suit to work instead of a skirt or dress.

Ethnic Apparel

The Nun's Habit which kind of, sort of, reminds me of...

The Muslim Burka

All of the above is to help me illustrate an idea I had while watching Herman "9 9 9" Cain voicing his denial of having participated in sexual harassment. It also reminded me of the denial given by Clarence Thomas to Anita Hill's statement.

Back in the smoke filled rooms of yore, men laughed at these women who said their bosses, for example, had in some way and to varying degrees sexually harassed them. They referred to the women as "sluts, whores, and sometime even c**ts." Some of the words used I won't type and some newscasters won't say. Or, even worse, they will say.

Thinking on this I was reminded of the politically incorrect word "n****r." This word was said when talking about people of a certain race. The other words were said about women.

Back around the same time as "Sesame Street" the National Organization for Women" was formed. Forty years ago It was and still is a civil rights fight against discrimination against women. The words I listed are just as offensive to women as the racial slur. And yet no one seems to acknowledge it.

The women involved in sexual harassment are often debased and ultimately deemed at fault for the action taken against them. Her apparel is considered: "Her skirt was so short you know what she wanted."

And so, we come to the Muslim Burka. Apparently the women must cover themselves to assure their beauty, their sex appeal to men is not seen. In other words they have to cover themselves up to keep the men in check. Men, it seems, cannot control their sexual urges and so women must be covered from head to toe.

All of this gets to the point that women are a minority. A minority who at one time could not vote, even when male slaves were considered 5/8th of a man. Women could not own property and in fact, were the property of their father or husband. They were property of their husband just as the slaves were.

I think, as women we need to say "No More" when words are used to slur our name and character. It's about time, don't you think?

Oh, and men need to take responsibility for their thoughts and actions. And control the urge that turns them into breeders.

November 02, 2011

Last spring, when the Egyptian demonstration videos were first sent in for American broadcast, I was in struck that the protesting rebels were using stones against the armed pro-Mubarak police and army.

We were in the communication age of the iPhone. Facebook and Twitter. Yet, while some had guns or rifles, the majority seemed to be fighting with biblical weapons of knives, sabers, and stones. Handcrafted shields of tin and cardboard protecting the protesters from the armies bullets and tear gas cans.

The communication was top notch, which made organizing groups of rebels that were miles apart possible. As well as telling citizens when and where to come when scheduling mass demonstrations. Or, when to hide.

Men, women and children using stones to keep the army and police away... even as the enemy stormed the square riding camels and whirling sabers above their heads.

While the demonstrations for freedom started as non-violent, they responded to attacks by throwing the stones. Through out, the people wanting to end the reign of Dictator Mubarak kept their spirit and fought back.

Americans and other countries joined them. But they did not bring stones. Many modern military weapons were used while "boots were on the ground," as well as planes bombing crucial areas being held by Mubarak. The enemy was being attacked and killed, but also civilians in the wrong place at the wrong time.

Drone Throwing

Drone Launching Missle

Group of Navy Drones 2005

There are different types of drones. They are all unmanned. Some are for surveillance, while others are used as bombs. In military action they can first seek you (the target) out and then another can be sent to getcha. Well, something like that. I'm sure you get the idea.

And this was done without any "boots on the ground." Thinking about this new tactic, I realized what a momentous change in military action this was.

Just as the stones in Egypt seemed so primitive to me, now the use of Drones is making it possible for man to man combat to fade into the past. A real triumph in military capabilities.

Seek, find, destroy. With fewer casualties of soldiers as well as civilians.

October 27, 2011

The following is from MOVEON.ORG.Democracy In Action

This is just insane.

Scott Olsen, a protester who’s done two tours of duty in Iraq and is now involved in Veterans For Peace, was critically wounded during an Oakland police raid by police projectiles. When people tried to help him, an officer lobbed a flash bang grenade right into their group. Olsen is currently hospitalized with serious injuries and is reported to be in critical condition.

This is how peaceful demonstrations are met...with violence...billy clubs, tear gas, smoke bombs, water hoses, dogs, sabers, guns. These are the standard weapons used in non-provoked violence. If the soundtrack was not in English, would you know where we were? Greece, maybe?

It happened in Chicago in 1968, but worse. It was the Democratic Convention. It was a peaceful demonstration against the Viet Nam War.

It happened during the Freedom Marches led by the Rev. Martin Luther King.

October 12, 2011

Sounds of Times A Changin

View the first video of the demonstrators. Then listen to Bob Dylan singing his best ever. I'm not a tech gal, so I don't know how to combine. So try to visualize the video with the song in the background. (If you know how to combine these please do).

By The Way, this was being sung during the 1968 Democratic Convention in Chicago where the demonstrators against Viet Nam were pummeled by the police. I was living in Chicago during that time.

This song has been sung by many good folk singers. I happen to think Dylan's version above is the best.

Listen... watch... and perhaps you can join in on a "Wall Street" closer to you.

October 09, 2011

I actually saw this on Bill Maher's show on Friday. I was very impressed and fell in love with Alan Grayson immediately. A friend of mine on facebook ("facebook friend" does not do justice to our connection even tho we virtually met on facebook) sent the following to me and I learned to share a long time ago:

While on Real Time with Bill Maher former congressman, and future 2012 House candidate, Alan Grayson explained to the panel the 1% what Occupy Wall Street is all about.

Here is the video:

The latest edition of Real Time featured one of Bill Maher’s patented balance things out with three Republicans and a Democrat panels, but the Democrat was Alan Grayson. While P.J. fellow panelist P.J. O’Rourke broke out his bathing and hippie jokes, former Rep. Grayson schooled him on Occupy Wall Street.

O’Rourke claimed that the Occupy Wall Street people flunked econ, and Grayson said, “No, listen Bill, I have no trouble understanding what they are talking about.” O’Rourke asked Grayson, “You passed econ?” Grayson answered, “I was an economist for more than three years, so I think so…Now let me tell you about what they’re talking about. They’re complaining that Wall Street wrecked the economy three years ago and nobody’s held responsible for that. Not a single person’s been indicted or convicted for destroying twenty percent of our national net worth accumulated over two centuries. They’re upset about the fact that Wall Street has iron control over the economic policies of this country, and that one party is a wholly owned subsidiary of Wall Street, and the other party caters to them as well.”

O’Rourke joked that Occupy Wall Street has found their spokesman, then Grayson continued, “Listen, if I am spokesman for all the people who think that we should not have 24 million people in this country who can’t find a full time job, that we should not have 50 million people in this country who can’t see a doctor when they’re sick, that we should’t have 47 million people in this country who need government help to feed themselves, and we should’t have 15 million families who owe more on their mortgage than the value of their home, okay, I’ll be that spokesman.”

Alan Grayson demonstrated why all the media complaint’s about the unclear message behind Occupy Wall Street is nonsense. It took former Rep. Grayson 37 seconds to explain what Occupy Wall Street is about. He almost delivered the perfect 30 second sound bite, but he ran a tiny bit over. It isn’t that the one percent and the Republicans who support them can’t understand Occupy Wall Street. It’s that they don’t want to. The message isn’t complicated.

The right has been trying to play on the fears of some who support Occupy Wall Street by claiming that the left is hijacking the movement, but the support and media sophistication of people like Alan Grayson and Bernie Sanders can only help these protests grow. Grayson demonstrated the value of having someone speak on the movement’s behalf that understands and is comfortable with television.

The right and many in the media will continue to make jokes and play dumb, but while they are laughing it up, a movement is growing. They may intentionally not understand the message of Occupy Wall Street, but millions of Americans do, and these people want their democracy back.

I've noticed lately that many progressive pundits have been ranting and raving the old movie line "I'm mad as hell, and I won't take it anymore!" And, they each have their own soap box topic: Republicans ridding the American workforce of Labor Unions, laying off tons of government workers, the rich not paying any taxes... all worthy of their ire.

But, the "Occupy Wall Street" (OWLS?) people have hit the whole problem on the head. If you are unable to support them with your presence, please support them with your voice or any other way you can.

We are mad as hell but, we know why and we know who the recipients of our wrath are.

October 04, 2011

Continuing the Starved Rock Retreat story... Part 3

Apparently the Park has various artists sculpt the dead trees. They were all over the place and much more interesting than any Elvis on Black Velvet paintings I've seen on other journeys. The Fox Ridge is directly in front of the Lodge.

What an interesting way of handling the death of trees. There were bears and other forest creatures tucked in here an there. If it weren't for the heat I would have looked at them a bit closer.

The following pictures are of the Lodge "lobby." What you see is very close to the reality. Though a large space, it has been decorated into conversational areas of various sizes, some with tables and chairs and others with comfortable sofas. The huge stone fireplace is magnificent. And like the grand canyon, no picture (of mine anyway) can do it justice.

As is our way, we stayed in the lobby most of the time...reading (The Chief), me on the internet via iPad 2 and people watching (the two of us). I am a bird watcher, but when without birds, I slip into people watching quite easily.

Cozy Sofas in the LobbyPhotograph by Sharon W Jensen

Double Lit Lobby Seating AreaPhotograph by Sharon W Jensen

Corner Lamp, Window and LogsPhotograph by Sharon W Jensen

I would describe the decor style as rustic Arts and Crafts. Such a warm and inviting feeling. The log walls providing a safe place to dream and not worry about the wooden foxes and bears lurking outside.

Vast Space Made CozyPhotograph by Sharon W Jensen

Beams, Lights and FlagPhotograph by Sharon W Jensen

The Lobby's warmth is almost sucked up by the massive stone fireplace. And yet, it still belongs where it stands. Perhaps with a fire blazing, the continuum would flow from the floor, up the stone slabs to heights unseen.

Early meals in the immense Dining Room allowed us to hear our own conversation. The menu had variety and the food was warm and good.

Wooden Chairs Waiting in The Dining RoomPhotograph by Sharon W Jensen

Tables by The WindowsPhotograph by Sharon W Jensen

A short promenade, so to speak, about the Lodge and visions of foliage, cabins, and flowers appear.

Always saving the best for last. The Chief gazing out the windows from another world.

We both felt like we belonged in this place. A quiet, restorative place. And, so...we will go back.

Post Script: I would just like to mention again that the CCC (Civilian Conservation Corps) were responsible for building this beautiful lodge back in the thirty's. This was one of the government programs to help create jobs for the many unemployed during the Great Depression. Thank you to the men who built log cabin castles and to FDR for providing work for those men.